Make the process of accessing medical cannabis easier, urges mother of boy with epilepsy

The mother of a boy with severe epilepsy has urged medical cannabis makers to ease the financial burden on beleaguered families.

Charlotte Caldwell said dozens of families with severe epilepsy are having to pay privately for prescriptions at a time when the cost of living is soaring.

Ms Caldwell and her son Billy, from Castlederg, Co Tyrone, played a leading role in a campaign to win a law change in 2018 allowing some patients to access treatment through the NHS.

However, she told the PA news agency that despite the breakthrough, the road has been difficult for families like hers.

She was speaking on the fourth anniversary of the confiscation of her son’s medical cannabis at Heathrow Airport after he returned from medical treatment in Canada. They had traveled there after their GP was unable to continue prescribing the drug.

It was later returned to him after he fell ill and was treated at Chelsea and Westminster Hospital in London, where his NHS doctor informed the Home Office that Billy’s condition was become deadly.

Charlotte Caldwell and her son Billy, 16, who played a key role in the campaign to change the law to allow the prescription of medical cannabis for certain conditions (Brian Lawless/PA)

(PA wire)

The then Home Secretary, Sajid Javid, allowed the return of medical cannabis and, in November of the same year, amended the law to allow its prescription by specialist doctors under certain conditions.

Ms Caldwell described the process of obtaining a health service-funded prescription for medical cannabis as tedious and said many families had to resort to private healthcare to obtain it or risk the black market .

She said four years after legalisation, there were 1,486 NHS-funded prescriptions for medical cannabis in the UK.

While I am delighted that there is now a pathway to affordable and reliable medical cannabis treatment in the UK, I am saddened that it remains a complex and sometimes opaque process.

Charlotte Caldwell

But she said it is estimated that up to 60 pediatric epilepsy patients cannot get NHS-funded medical cannabis and some would pay up to £2,000 a month to access it through private healthcare .

About 1.4 million people use cannabis on the black market to treat a medical condition.

Ms Caldwell offers her experience to advise families and has made several appeals to the government and medical cannabis manufacturers to facilitate the process.

She said a framework exists but is only available to people aged 18 or under, leaving behind ‘forgotten children’ who require full-time care.

“The Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) was established in 2020 to support pediatric neurologists when considering medical cannabis (and other new treatments) for refractory epilepsy; his unbiased recommendations are passed on to the patient’s doctor, and it was through this route that Billy reclaimed his NHS funding in October 2020,’ she said, urging that it be extended to all ages.

Ms Caldwell offers her experience to advise families (Brian Lawless/PA)

(PA wire)

Ms. Caldwell is also asking medical cannabis manufacturers to offer their drugs to pediatric epilepsy patients while they go through the RESCAS process.

She told PA: “While I am delighted that there is now a pathway to affordable and reliable medical cannabis treatment in the UK, I am saddened that it remains a complex and sometimes opaque process.

“Four years after Billy’s medication was confiscated from me at Heathrow Airport, I want to share the lessons of my experience with other families, for whom the journey need not be so burdensome complications, grief and enormous personal expense.

“I also call on medical cannabis manufacturers, who are doing so well with private prescriptions, to put their medicine where their mouths are by offering medical cannabis to patients seeking NHS funding.

“It would immediately relieve a huge financial burden facing patients and their families, during which time I hope to help them navigate the complicated approval process.”

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